Is a person with advanced dementia “dying”?

The question of whether an individual with advanced dementia is dying is critically important because there is an extensive literature suggesting that if a person is a goses (a moribund person), there is no obligation to try to prolong his or her life. On the contrary, some would argue, it is important to remove any impediments to the person's dying. By way of example, rabbinic commentators frequently cite the Talmudic story of Rabbi Judah the Prince (Ketubot 104a), who was dying a painful death and whose followers tried to prevent his death through prayer. His handmaid, observing his suffering, dropped some dishes to distract the praying followers. During the instant that they ceased praying, Rabbi Judah's soul departed.¹¹ The implication is that a person whose death is imminent should be allowed to die. Some individuals with advanced dementia are clearly moribund: they cannot even swallow their own saliva, and will undoubtedly die in a matter of days from aspiration of their secretions, whether or not a feeding tube is inserted. At this extreme stage, the sufferer from Alzheimer's fits the talmudic description of a goses as a patient whose death is imminent because “he has lost control of bodily functions as manifested by his inability to bring up secretions from his chest”.¹²

While most patients with advanced dementia cannot be regarded as goses, they can be regarded as treifah (being in a condition for which there is no cure and from which they will “surely die”.) Traditional texts distinguish between treatments that can effect long term cure and those that can merely extend life for a short time, usually defined as less than one year. Some commentators indicate that it is permissible to remove any impediment to death, even if a person is not a goses (expected to die in a matter of days), but is merely a treifah.⁸ The distinction between withholding life-prolonging measures from someone who is expected to die in days and from someone who is expected to die within a year is probably anachronistic: it was made because, in previous eras, physicians were unable reliably to diagnose the state of treifah. Only a person who is a goses was certain to be dying. More sophisticated prognostic capacities, which enable physicians to predict with reasonable accuracy that death will occur within a year, allow individuals with a slightly less dire prognosis to be viewed, none the less, as dying.¹¹

At the present time, dementia is a progressive, irreversible condition that inevitably results in death. Studies of elderly persons with advanced dementia and impaired eating or swallowing show that the median survival is approximately six months,⁵ and interestingly, the survival time is the same for those with a gastrostomy tube and those who do not have a feeding tube.¹³ Thus, an individual with advanced dementia who has reached the stage in which he or she cannot eat can be regarded as dying. From this perspective, withholding possibly life-sustaining medical treatment from those with severe dementia is consistent with halacha.

Are persons with advanced dementia suffering?

Many traditional Jewish commentators acknowledge that a person who is terminally ill, whether he is a goses or treifah, is not obligated to undergo life-prolonging measures that produce or prolong suffering: “If the underlying illness is very painful, it is not obligatory to administer medication that will only prolong the life of suffering without any hope of cure”.⁹ Assuming that feeding tubes can in fact prolong life, which is far from clear, then whether artificial nutrition prolongs suffering depends on whether dementia is a painful condition.¹⁴ Dementia is not inherently a physically painful condition, though it is often associated with the development of painful problems. The immobility of the person with advanced dementia, for example, may lead to the development of a pressure ulcer, a painful skin condition. In addition, patients with advanced dementia develop contractures (the inability to straighten their limbs) as well as recurrent episodes of pneumonia.

Patients with advanced dementia do not have the cognitive capacity to experience existential suffering—they are unaware of their condition, they do not know or understand that they were once able to think and to reason, and therefore they cannot be distressed by their loss. However, the corollary of this profound lack of understanding is that discomforts such as having one's blood drawn or other tests performed, discomforts that may be well-tolerated by a cognitively intact person who understands their justification, are often frightening to someone who cannot comprehend what is being done. From this perspective, advanced dementia is inextricably bound up with suffering. Reasoning based on halacha implies that life-sustaining treatment may be inappropriate in cases of severe dementia because it prolongs suffering.

Feeding tubes have the potential to produce suffering, quite apart from whether the person with advanced dementia is suffering from his underlying disease. Patients with gastrostomy tubes commonly are physically restrained to prevent them from pulling out the tube.¹⁵ Typically this entails tying the hands to the side of the bed or chair. Despite the difficulties in assessing the emotional state of a person with advanced dementia, most observers believe that restraints are demeaning and distressing to all patients, regardless of their cognitive status.¹⁶ Halachic authorities have argued that artificial nutrition should not be forced on someone who resists: “Certainly one should never compel a sane adult to eat by employing physical force”.¹⁷ The applicability of this assertion to the case of an individual with advanced dementia is unclear. Nevertheless, tube feeding, at least in those instances in which the recipient repeatedly attempts to remove the tube, may cause suffering. According to traditional arguments, life-sustaining treatment could be withheld under such circumstances; indeed, the pre-eminent halachic authority, Rav Moshe Feinstein, has indicated that in patients who can live for only several weeks or months, the “key concern is their quality of life”.¹⁸

Is artificial hydration and nutrition a special case?

Most contemporary traditional Jewish commentators assert that food and fluids must always be provided, even to a severely demented person who has lost the capacity to swallow. Every patient must be fed because “food is a requirement of nature, for all people and even for animals, in order to sustain life”.¹⁹ This is contrasted with medicine, which is not “natural” and can be withheld. Thus, even if life-sustaining medical treatment can be withheld from demented individuals, either because they are dying or because they are suffering, nutrition may not be withheld.

But oxygen is just as “natural” and “necessary” as nutrition to sustain human life, and the rabbinic interpreters of Jewish law accept withholding of a respirator to provide oxygen on the grounds that it is an “extraordinary measure”.¹² Clearly, it would be wrong to withhold food and drink from someone who was able to take food by mouth, just as it would be wrong to put a person in a room with no oxygen. But “withholding” nutrition is an inaccurate description of what takes place when a feeding tube is not inserted into a person with advanced dementia. That person has lost interest in food and will not swallow, or has lost the capacity to eat, as part of his progressive, irreversible dementing illness. When he or she is offered food, the person pushes it away, or takes only a tiny amount, or chokes on it. Compelling him or her to take in nutrition artificially—via a surgically placed tube—is no different from compelling him or her to take oxygen in through a respirator if he or she cannot breathe independently. Thus, while it may be true that “food is not at all comparable to medication since food is a natural substance which all living creatures require to maintain life”,¹⁷ it is not true that “artificial nutrition” is synonymous with “food”. Some halachic authorities have in fact taken the position that artificial nutrition is a form of medical therapy.¹⁷

A second reason why many traditional Jewish commentators believe artificial nutrition and hydration constitute a special case is that they are concerned with the comfort of the patient: they assume that food and fluids are necessary for comfort. Current data indicate that individuals who have lost either the capacity or the will to eat, typically from metastatic cancer, and who are lucid enough to describe the sensations they experience, uniformly deny hunger or thirst.²⁰ By extrapolation, the patient with advanced dementia who can no longer eat does not, as best as can be determined, experience discomfort from his under-nourished state.

A third reason why traditional Jewish thinkers treat artificial nutrition and hydration as a special case is that they wish to show respect to the still living body of the person with advanced dementia. The belief that the person with endstage dementia should be nourished rests on an association between “feeding” and “caring”. What is at issue here is how we define what we mean by “caring”. There is little that is caring or nurturing in surgically invading the stomach of an uncomprehending person and subsequently utilising a mechanical pump to instill a chemical solution into the tube.²¹ Clearly, finding means to demonstrate caring and respect are essential: the individual with advanced dementia must be kept from experiencing pain or cold or callousness. Tube feeding does not fall into the category of such essential activities. The Jewish arguments for distinguishing between artificial nutrition and hydration and medical treatment are not substantively different from those previously advanced by secular bioethicists. Just as the prevailing view in secular circles is that artificial nutrition is a form of medical therapy,²² so too it should be considered treatment within a traditional Jewish framework.

Once we have considered these three questions— are those with severe dementia dying, do the severely demented suffer, and is artificial nutrition and hydration separate from medical treatment, we can arrive at some conclusions about the approach to feeding that is consistent with a tradition such as halachic Judaism that places a strong emphasis on the sanctity of life. Those with advanced dementia are dying: they have an incurable condition with a life expectancy that is typically one year or less. They are suffering, since their dementia often results in their finding even routine activities such as being dressed, bathed, or moved frightening and uncomfortable. And while food and drink should never be withheld from those with eating or swallowing problems and dementia who are hungry or thirsty, individuals with advanced dementia who stop eating do not experience these symptoms. Nutrition and hydration administered via a feeding tube are no more natural and necessary than is oxygen administered via a ventilator.

The focus on the sanctity of life that is central to traditional Judaism implies that those with severe dementia should be treated with respect and care. This includes being kept warm, being offered food and drink, being kept clothed, and being treated with gentleness and kindness. Most, though not all, rabbinic commentators have maintained that the tradition necessitates the use of artificial nutrition and hydration. My analysis indicates that such a conclusion is based on a misunderstanding about the nature of artificial hydration and nutrition, a lack of awareness of the nature of Alzheimer's disease, and a failure to appreciate the consequences of withholding tube feeding. Palliation of the person with advanced dementia is consistent with traditional Judaism.